TSC Talks Special Broadcast: The Tower of Babel, Pt 2 brings Brooke Alisha back to talk with host Jill Woodworth about parenting teens and young adults with TSC. Group homes are an option and Brooke and Jill discuss the pros and cons.
Brooke has had huge success utilizing Thrive-THRIVE Experience is an 8-week premium lifestyle plan, to help individuals experience and reach peak physical and mental levels. Brooke is a mom, TSC advocate, Adult Regional Coordinator for the TS Alliance, and a hairstylist. Check out her Facebook here: https://www.facebook.com/brookey21
Jill Woodworth. (Human being. Writer,) Podcaster. Chronicler of being human. Parent of 5, 3 of whom have Tuberous Sclerosis Complex (TSC), each with varying effect. Committed to giving voice to the underdog, the oppressed, those for whom being heard is crucial to survival and quality of life. If you are part of my world, which is everyone willing to take an honest look at their lives and discuss how the direst and most desperate of situations often lead to the most understanding and personal growth and compassion plus an inner motivation to work toward social good, then join my network! Let me know if you have a story to tell or if you need help to connect with this growing market. Contact me on linked in or drop me a note on https://tsctalks.com or pjlacy6@gmail.com. Offering podcast sponsorship, advertising, consulting, research, speaking and more.
Here is an excerpt from the transcript, click link for full transcript: https://otter.ai/u/Y6Z9mem7vmGFueMlLMBQnPsaV34
“We’ve done our best to advocate and support our daughters, we’ve had to make tough decisions, lean on mental health services to keep them safe, preserve our own safety. And sometimes these choices are sorely inadequate. Sometimes our resources run out before we can get our loved ones into a situation where they can take advantage of supports and services and start to forge their own lives. Sometimes group homes are a good option, and ideally should be a good option for more. But again, we are dependent, or they’re dependent on funding and disconnects between providers and often not able to implement and implement enough surrounding support services that would enable individuals to be more successful learn from the group home living situation and move into a less restrictive environment. So, you know, I think my point is that I think they can work. I think there’s a lot of challenges. So Brooke, why don’t you go ahead and give me a little bit of your background and talk about your experience.”
“Okay, I know this is part two. So if you watch part one, you can hear a lot. I mean, we could re-share that somewhere. So speaking on that I was diagnosed at 18 with TSC. And I had kidney tumors, basically was dealing with a lot of kidney stones, urinary tract infections, that type of thing at the age of like, 17ish, probably a little bit after my hormones got to use, you know, used to my body, and were like, Hey, we’re not gonna let you do life anymore. I was a cheerleader, ice skater, singer traveling singing group for a Christian. It was called Youth for Christ, stuff like that. I was very, very involved in a lot of things. So for me to be told at 18 I’d be in the wheelchair by the age of 30 was very detrimental to my mental health. Being told I could never have children. If I did, my body would fight the fetus off. So I just gave up and like, honestly, I was in Darvocet in the basement, and like watch real world and just said My mind was just junk. Because I just like might as well live vicariously through someone else. Since I can’t leave my basement.”
“Moving on, I ended up getting pregnant have a daughter with Tuberous Sclerosis Complex at the doctor, I was told that basically, you should have an abortion because your body will fight the fetus off anyways. But for me, I chose not to everybody has a different view on that. And that’s fine. But that’s something I wanted to have to live with. And then having her she was good for about the first four months. And you know, it’s just, it’s a whole long story when you have to see and I could break down every single little bit of our lives. But I then was pregnant for my son after she started seizing and went to Canada for infantile spasms. I mean, if you I know we’ve all been through a different differently. We’re on a different boat, Jill has different stories with her children that I’ll have with my daughter. But listen, that boat was sinking”
They also discuss alternative medicine options that they each have utilized and for which they feel strongly can be useful for those living with TSC and other chronic life-threatening conditions. Long term polypharmacy issues are incredible and waiting for pharmaceutical formulations of cannabis is not an option. We are witnessing suffering and mental/physical health issues that can be addressed in part through other modalities. Jill is a strong advocate for affordable access to cannabinoid medicine for those living with TSC and others who are dependent on funding and disconnects between providers and often not able to implement and implement enough surrounding support services that would enable individuals to be more successful learn from the group home living situation and move into a less restrictive environment.
Brooke’s links: https://www.instagram.com/b3mor34u/
YouTube: https://www.youtube.com/channel/UCdP1KUfMBhO2l4bDHaciM0w
Jill: https://linktr.ee/jillwoodworth